Hirschsprungs Disease.co.uk is a collection of experiences of families all over the UK so that families of children with Hirschsprung's Disease can find information, connection and support as you navigate each stage of your journey.
Having a baby who was poorly, then diagnosed with a rare disease was incredibly scary. I felt very alone. I scoured the internet for information and while there were some resources, I was finding dribs and drabs all over the place and it wasn't all UK-specific. I started sharing our story on social media as it was happening, in the hope that other families experiencing the same didn't feel as alone when they found us.
About Georgina
Hello, my name is Georgina! My little boy Ffredi has Hirschspung's disease. I'm working hard to raise awareness of Hirschsprung's Disease, raising a baby with a stoma and the challenges that parents face while advocating for a child with medical needs.
I decided to launch Hirschsprungs Disease.co.uk in honour of Ffredi but as a collection of experiences of families all over the UK so that when you find this place, you'll know you aren't alone.
What is Hirschsprung's Disease?
Hirschsprung's Disease is a rare congenital disease in which nerves are missing from parts of the intestine. For Ffredi and other children with Hirschsprungs disease, their large intestine doesn’t work in the way it should, meaning that the bowel can become blocked and result in a very serious infection.
The disease affects around 200 children per year in the UK which is 1 in 5000.
Information
Collected by parents and carers, information about Hirschsprung's disease
Support
From support groups to podcasts to charities.
Stories
We share our experiences so you feel less alone.
Parent Led
Hirschsprung's Disease.co.uk is created and contributed to by parents and carers of children with Hirschsprung's Disease.
The information contained in this website is not written by medical professionals, it is based on experience and we always encourage you to engage with your medical professional for individual medical information.
UK Based
Hirschsprung's Disease.co.uk is created and contributed to by parents and carers of children with Hirschsprung's Disease based in the UK.
It's important to note that different countries have different protocols and you should refer to your medical professional for more information.